[48:47]  TS — Absolutely. Oh my goodness. 

I would also love to have you talk a little bit about the results you get and your success rate in working with kids, because it’s pretty impressive. I mean, this isn’t a magic cure. It’s not like all you have to do is take this and that’s it for the rest of your life, you’re fixed, and that it works in everybody, but your success rate is still pretty astounding. I would love to have you share that.

[49:16]  MC —  Yes. My success rate in helping the 25 and under age group feel substantially better with fibromyalgia on the Guaifenesin Protocol is 95%. With that other 5%, I wonder if maybe they had another condition going on that had not yet been diagnosed that kept them from feeling well. It’s just in the kids 25 and under, they just respond so well. I mean, adults respond very well too, but it’s almost a given in children that they’re going to feel better.

[50:02]  TS —  Yeah, that’s so fascinating. And with adults, what are you finding, just for comparison sake?

[50:09]  MC —  If I take a look at a year, most people I care for with fibromyalgia at a year, they’re feeling substantially better, but I’m not just using guaifenesin. I’m talking about diet, getting consistent aerobic exercise, proper hydration, mind/body therapies. So, it’s hard to separate that out. But I would say to you, go to… In Seattle, where you are, why don’t you go, just for instance, to an adult neurologist or rheumatologist and say, “Oh, after you’ve treated your fibromyalgia patients for a year, what percentage of them are feeling substantially better?”

[51:01]  TS —  That’s funny because last week I did go to a new neurologist here, and I was talking to him, of course, about what I do, and I think he asked me about three times, “So, you don’t have fibromyalgia pain anymore?” I’m like, “Not really. No. That’s actually what I do.” So, I kind of know his answer to that question just by how he responded to me talking about how I feel with my fibromyalgia. It’s kind of unheard of, in the adult fibromyalgia world, to get better, like at all, period. I know we’re here talking about juvenile fibromyalgia, but that is why we’re talking about juvenile fibromyalgia. Let’s help these kids before they get to be adults and enter that world where getting better is an anomaly.

[51:56]  MC — Yes, absolutely. You hit the nail on the head. It takes a lot more work for adults, and with your awesome coaching and all that you have done personally to help you feel better. It’s what I do with my patients. And, personally, you know, it’s not just one thing. It’s a bunch of things to really maximize the treatments that help us feel better. 

And kids? It’s pretty much easy. I just make sure that they drink water because a lot of them have headaches when they come home from school — ven kids without fibromyalgia get headaches — and take your guaifenesin, chances are you’ll get better.

[52:43]  TS — Right. So, you with your kids, you don’t have to do quite all the same dietary changes for instance?

[52:53]  MC — Ah, that’s a good question. So, yes, Dr. St. Amand found that 30 to 40% of adults with fibromyalgia have carb tolerance, where their blood sugar really fluctuates when they eat certain types and certain amounts of carbs. He has found a list of foods that really keeps the blood sugar steady. If people go on that food plan, it really helps give them more energy and sleep better and have a more stable mood. 

So, I do ask children or parents of children that same questions about fluctuating blood sugar and, yes, every now and then I will get kids who really need to have frequent high protein, high fat snacks, and really just have an exaggerated response to sugar where they are just bottoming out. Every now and then, I’ll see a teenager who really does better if they do go on the special food plan. But that’s more rare in kids. So, it’s a case by case.

[54:08]  TS — Yes. Because somebody who is an adult with fibromyalgia, I can imagine that this is part of the resistance to getting your child diagnosed. I know all of the things that I have to do. I pretty much don’t have body pain these days, but there’s a lot that I do to make that happen. Right? There’s a lot that I do. 

So, you think about… If I get my child diagnosed, I’m giving them not only my illness, but I’m also giving them this burden of all of these things that they have to do. I just feel like that’s a huge part of the resistance in taking your child to be diagnosed, is that you’re almost sentencing them to this particular kind of life, not just the pain, but also the life of always having to be aware of your choices, and always having to watch your energy and what you eat and what you do and how you sleep and all the things. Right? But what you’re describing is a much different scenario.

[55:16]  MC — A much different scenario. And, of course, in order to do the perfect study, I would have to do the identical twin study where they both had fibromyalgia and one went on guaifenesin and the other didn’t. But I can tell you in the hundreds of kids I’ve seen over the past eight plus years that they become really pain-free, active kids who really just don’t have any symptoms. They may get tired a little bit more easily, but they really don’t have any restrictions.

[55:59]  TS — That’s wonderful. 

So, for the person who is listening to this — who is most likely an adult who is listening, rather than the child — what advice would you give? What steps would you give to them if they’re listening to this episode and there are a lot of things that are light bulbs going off in the head, boxes being checked. Like, “Okay, this might be something we need to check out.” What would you recommend that they do? What would the next steps be?

[56:31]  MC — Well, I would recommend that they would start making a list of the things that they notice. The list needs to be something like this: What is the trouble that they’ve noticed, whether it’s fatigue or pain, and is there a virus at the same time, or what is the whole scenario, so the pediatricians and, or specialists will know. And then it is always wonderful for doctors to see video.

[Side note: we have created a special worksheet to help you create this list. Sign up to receive a copy of the worksheet here.]

[57:12]  TS — And that’s interesting. I would not have thought of that.

[57:14]  MC — When I was a pediatrician I loved to see video. Let’s say parents of my pediatric patient were worried that their child was having seizures or abnormal movement, or they might be having some trouble with obstructive sleep apnea or breathing trouble. I would have them do a videotape with audio of the child’s sleeping and of the child’s movement, because a picture’s worth a thousand words. So, in the situation where I was describing before on the soccer field, there could be a short clip of a game where the child was scoring a goal and keeping up nicely, and then the next game where you could see the child trying to keep up but was lagging behind.

[58:14]  TS — So, kind of like, “Here’s my kid on a good day, and here’s what I’m noticing on a bad day.”

[58:19]  MC — Exactly. And there’s no fever, and there hasn’t been a car accident, and there’s nothing else going on. And for the neurologists and rheumatologists and pediatricians that aren’t familiar with pediatric fibromyalgia, this will really help them, where it’s kind of like a month in the life of my child.

[58:47]  TS — Yes. I love that. I think too — just my troubleshooting, my Coach brain is working here — I would imagine that it would be super helpful to… Okay, I’ve noticed this one particular thing, right? Like, for instance, my client who had the daughter who said, “Ooh, that hurts”, to notice, but then make a specific point of noticing or watching for that when the child doesn’t know you’re watching.

[59:16]  MC — Absolutely. Yes.

[59:18]  TS — That’s what you were referring to earlier about there being a payoff. If that same activity is there when you’re all by yourself and nobody else knows, if you still say, “Oh, that hurts”…

[59:32]  MC — Do you remember when we were kids and our parents took out the video cameras. We all hammed for the cameras, right?

[59:40]  TS — We totally did. Yes.

[59:42]  MC — But now, kids are so used to being videotaped with our smartphones, that they really don’t ham as much — especially if you can videotape them in a situation where they don’t know they’re being filmed, like on the playground, on the soccer field, things like that. When they’re at home, and you’re kind of in another room, and you are watching, you can see them massaging their lower leg and doing things like that. It’s just so helpful for the pediatrician and specialists to get these little vignettes.

[01:00:32]  TS — I love that. Then, once they’ve made all these observations, is it best to just talk to their own fibro specialist or make an appointment to talk to the pediatrician? What is the next step once you’ve gathered this information?

[01:00:51]  MC — The pediatrician should be the first point of contact. That’s the doctor that knows the child best. Then, they can recommend a referral to a pediatric fibromyalgia specialist. In some areas there aren’t any, and in some areas there are pediatric fibromyalgia specialists. Patients are welcome to contact me or Dr. St. Amand because of the large number of kids we see. 

But the main point I want to make is, be your child’s advocate. Most kids don’t have the secondary gain necessity. They’re just trying to go through life and do the things they want to do and do the things that their parents want them to do. So, find a doctor that believes you and really wants to get these symptoms evaluated, and keep pushing until you find someone that understands what you’re talking about and really wants to work with you and your child in order to make a diagnosis and to really give you a wide tool box to choose from when you choose the treatment for your child.